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Rare Disorders NZ knows from lived experience and evidence from surveys and research that diagnosis, care and treatment, screening, managing genetics and hereditary issues in families, and wider health matters are so challenging for those living with rare disorders, and current outcomes are poor and inequitable.

Precision health offers an opportunity to make significant real progress in all these areas for those living with a rare disorder now and in the future.

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Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 160 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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